Balancing Data Privacy and Data Sharing: Normative and Technical Approaches

April 8, 2022 -
12:00pm to 1:00pm

Bradley Malin, PhD
Accenture Professor of Biomedical Informatics, Biostatistics, and Computer Science, Vanderbilt University

Effy Vayena, PhD
Professor of Bioethics, Swiss Institute of Technology

Lucila Ohno-Machado, MD, PhD
Distinguished Professor of Medicine and Chair of the Department of Biomedical Informatics, UC San Diego Health

Abstract: To maximize benefits for patients, broad access to comprehensive genomic datasets is necessary. However, data sharing is in tension with privacy obligations to individuals and groups and threatens autonomy and control over data use. Data sharing policies, governance strategies, and technical solutions have been proposed and implemented to resolve this tension. However, full resolution of this issue has not been achieved. What do ELSI scholars, data scientists, policy makers, health researchers, and other stakeholders need to do to move forward?

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ELSI Hub Friday Forum sponsored by NHGRI

Location and Address

Online